Tales of my MScapades and non-MScapades.

Epiphanies

I agonised about whether the title of this post should be ‘In defence of…’ ‘a’ or ‘the’ quiet life. I went for ‘my’ because it’s specific: everyone’s life is different, right? Regardless of its volume.

In my teenage bedroom the walls were, and I use this term in its loosest possible sense, ‘decorated’ with pieces of plain paper on which I would write song lyrics, fractions of poetry, snippets of my own awful, angsty writing. I was aspirational pretentious. One of my favourite lyrics at the time went:

Why live in the world when you can live in your head?

From Pulp’s Monday Morning. And now I have part of an Annie Dillard quote tattooed on my arm, which goes:

But a life spent reading – that is a good life.

Are you drawing a comparison?

Seems to me that I’ve always tended toward a quiet, non-experiential life. And herein lies the rub: is this something I should feel bad about? Should I hate myself, even just an small amount? Are all the books, the songs, the imaginings really an adequate substitute? Should I accept, even defend, the stillness of my life or should I turn up the volume, as it were?

The other day I was having a private tantrum wondering why we weren’t going away anywhere this summer when we clearly should be able to afford it. I was angry that I wasn’t exploring exciting locations, having my mindset slightly altered, if only for the duration of the ‘holiday’, creating beautiful memories or, at least, well-shot Instagrams – see how I try to belittle to reassure myself?

But then I realised. We could indeed afford to travel somewhere that’s not here, except we spent our money on a new carpet for the hall and a lovely garden bench. The quiet life. And I love my house, being at home, nesting. Like a tiny bird. And the bench, which I’m calling my Reading Bench, will give me real long term pleasure. So just shut up. But… It’s a big world, kiddo. And before I die, I’d like to see a bit more of it.

I realise that this post doesn’t really live up to the promise contained within its title. Not really a defence, is it? It would’ve been more honest to write:

I’ve been off work for the past couple of weeks battling extreme – I mean EXTREME – fatigue.

Early 90s call-back! Hair!

Is ‘battling’ the correct verb? It’s so proactive, confrontational. Would ‘suffering’, ‘enduring’, even plain old, sitting on the fence, no bias here, ‘experiencing’, be better? I think it depends where I am on the self-pity scale. I’m leaning toward ‘enduring’ right now.

Have I mentioned how awful a symptom fatigue is? Yep, I think maybe I have. No need for sarcasm young lady (or man, if you must)! It doesn’t suit you.

Enough rambling. We’re here to explore the question: What’s me and what’s MS?So take off those muddy boots, leave them by the door step, come join me on the rug.

Some ramblers, yesterday.

I think I’ve got this on my mind because fatigue’s the kind of symptom that lends itself to this question.

What I mean is, for example, I’ve never particularly relished the grind of day-to-day, full-time work (I know, who does and what exactly is wrong with them?), but does this mean that my MS perhaps has always been there, lurking in the shadows of my nervous system, biding its time, menacingly rubbing together its creepy little paws, sniggering in the manner of a cartoon villain, sporting a cape and other assorted accoutrements associated with such a character. Chilling.

My point is thus: Have I found work tiresome because I’ve been suffering from MSfatigue, or is it just that I find work tiresome?

That’s not a good example.

I think what I’m trying (and pretty much failing) to say, is because of the nature of this cussing mother-cussing disease, because so many of the symptoms, like fatigue, are invisible – other people can’t see them – you see? Which means you have to (over)explain them and, if you’re anything like me, this makes you feel fraudulent. Like a big, fat liar.

Like you’re making excuses for the person that you are, rather than legitimately providing information about the condition that you’re in no way responsible for having (enduring).